A Road Less Travelled – Living with Neuroendocrine Cancer

Still Learning

Happy to report that the visit to the see the surgeon went well, Dr Fulford was a lovely guy and went through everything with us, explaining what the options are and the risks. We even got to see my CT scan and view my resident aliens, he even drew a diagram showing their positions, didn’t sign it though!! We really do learn something new each time we go up to the Christie, it’s a bit of a slow reveal.

Thankfully no surgery is required yet, and when it is, it is not going to cure anything, it will be more about quality of life, but I already knew that. The primary tumour in my small bowel is not causing any obstruction so is best left alone unless it starts to cause problems, other than being an uninvited resident. The lymph node in the mesenteric layer of the small intestines is not in a good position for surgery, therefore not to be messed with unless absolutely necessary. There is also a para-aorticlymphnode by the main artery and a possible peritoneal nodule on the sigmoid part of the colon, which could represent peritoneal disease. Dr Fulford also recommended that I have a gallium PET CT in June when my liver MRI is due to provide an up to date staging. Below my version of Dr Fulford’s diagram without all the scribbles, just a rough outline of my insides, not to scale😉

I am getting used to the higher dose of my injection now too, the post jab lag generally starts about 24 hours after, and seems to last 3-4 days, and that I can cope with and plan around. The headache is not good, but co-codamol takes the edge off it for me and helps with the stomach cramps too. I need to have easy access to the loo for a couple of days, but the Creon is definitely helping, and I am getting better with remembering to take it, honest!! The itchy butt can be a bit embarrassing, but with fewer side effects since treatment firststarted, most of the time I can predict what will happen when. Although this is can be subject to change without prior consultation with myself, however I consider these side effects as a small price to pay, especially as everything is fairly stable at the moment.

We did the ‘Dance for Life’ in Birmingham on the 23rd April, run by Peter Kay, it was a great night. We had no idea what to expect, but there was a real party atmosphere and plenty of room to dance. The music was great, we danced for three hours and the time flew by, and he implied that he would do it again next year. We have already got some ideas for our outfits, which will not be as sedate as this years!! There were some great costumes, so we really need to up the ante, might even try a different venue too.

I was tired after though, especially as Ade and myself had been walking in the Peak District on the Friday, which we are lucky enough to have on our doorstep. The weather was perfect for it, unlike the following week. I am trying to keep up with the swimming too, this will I hope help with my stamina, but I am no athlete, I would describe myself as being built more for buoyancy than speed!! I had my first injection at home this week in a while too, so this week has been a bit of wash out energy wise😴

I also started my social media course, not quite what I was expecting, but I will stick with it as it is only for 2 weeks. I was hoping for a practical course that would give me some pointers on managing your on-line presence, and promoting yourself. But it is very technical and detailed, and for me quite tedious, as it most of it was about networks and analysis. I suppose having worked in IT for 20 years didn’t help as it was telling me stuff I already knew. Fingers crossed the second week will bear more resemblance to the course outline, being a bit more relevant and practical.

Glad you like the pics, had a new compact camera for Christmas that has wifi to upload. It was its first outing and I am still trying to work it out!! I am only really a snapper, Ade is the professional😉 xx